And then we also have this from July. I predict more to come
'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]
- Thread starter InitialConditions
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NHS Guidance pages due for review 28 May 2027.
www.nhs.uk
In one of UKPoster's comments, they said they had "bigger fish to fry".
Thought it a strange and slightly out of context comment at the time. It's all starting to come into sharper focus now.
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
www.nhs.uk
In one of UKPoster's comments, they said they had "bigger fish to fry".
Thought it a strange and slightly out of context comment at the time. It's all starting to come into sharper focus now.
Add me onto a group if you think I'll be of use /that's OK (I'm interested anyway).
be good if there are a number of us, I'm worse than normal atm.
James Frith MP - GOV.UK
New Minister for Health Innovation including list of specific areas covered.
The original announcement of this new research included:
Felis Catus
Senior Member (Voting Rights)
I don't want to overwhelm you or push you beyond your limits. I don't know if you've seen this thread. Might be of interest.NHS Guidance pages due for review 28 May 2027.
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
In one of UKPoster's comments, they said they had "bigger fish to fry".
Thought it a strange and slightly out of context comment at the time. It's all starting to come into sharper focus now.
I've found it.NHS Guidance pages due for review 28 May 2027.
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
In one of UKPoster's comments, they said they had "bigger fish to fry".
Thought it a strange and slightly out of context comment at the time. It's all starting to come into sharper focus now.
Yes, this is a bit strange:
No this is new to me and quite illuminating. Thank you. I suspect Coffi will be the trusted resource and peer support I referenced up thread or the recovery channel.
Well done @bobbler.
And, no doubt, here are the international bods supporting the Goldsmith Report as referred to in the the original advertisement for the Goldsmith research. I see Wessely and Chalder are still there and Coffi are now supporting children. https://www.coffi-collaborative.com/blank-9
Think I've seen enough for now.
Shan't be around for a few days. Last 4 days have been pretty full on for me especially the spurt over the few hours but worth the PEM.
Hopefully the above few posts give a flavour of my current thoughts, and why my solicitor needs a copy.
Edit
Back to the future, 1989 - as if all the legal proceedings, judicial reviews, deaths since and Regulation 28 Prevention of future deaths and parliamentary debates, NICE guidelines and Delivery plan, PACE and a whole lot more didn't happen
Make no mistake this will be institutional and political choices which they will need to defend.
Management of chronic (post-viral) fatigue syndrome - PMC
Simple rehabilitative strategies are proposed to help patients with the chronic fatigue syndrome. A model is outlined of an acute illness giving way to a chronic fatigue state in which symptoms are perpetuated by a cycle of inactivity, deterioration ...
pmc.ncbi.nlm.nih.gov
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I have been deeply affected by some sad news tonight. A bit of an emotional rollercoaster all round today.
It has caused me to rethink who I write to as there is a serious political and institutional issue regarding this illness in the UK.
I now see no point in writing to the government or anyone else in this country, that much is self evident.
I propose I therefore write to the UN. It is after all a matter of human rights.
I shall, as a courtesy only, write to the Minister to forewarn him of the action I have taken without providing any detail. But then again I might not even bother to do that.
A copy of the UN letter will be placed with the bundle of papers held by my solicitors. I shall leave instructions with them to request the Coroner for an inquest into my death regardless of cause; just in case, as the UN complaint process can take a while, should they decide to investigate.
I shall not discuss this further on the public forum but will continue in an advocacy group in private.
If anyone thinks this is really bad idea, please feel to let me know.
It's about time we were treated with some dignity.
Edit. Forgot to add a link to the rights I'm referring to, so you see for yourselves what they are.
https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities
It has caused me to rethink who I write to as there is a serious political and institutional issue regarding this illness in the UK.
I now see no point in writing to the government or anyone else in this country, that much is self evident.
I propose I therefore write to the UN. It is after all a matter of human rights.
I shall, as a courtesy only, write to the Minister to forewarn him of the action I have taken without providing any detail. But then again I might not even bother to do that.
A copy of the UN letter will be placed with the bundle of papers held by my solicitors. I shall leave instructions with them to request the Coroner for an inquest into my death regardless of cause; just in case, as the UN complaint process can take a while, should they decide to investigate.
I shall not discuss this further on the public forum but will continue in an advocacy group in private.
If anyone thinks this is really bad idea, please feel to let me know.
It's about time we were treated with some dignity.
Edit. Forgot to add a link to the rights I'm referring to, so you see for yourselves what they are.
https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities
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I posted this in 2025 when I raised my complaint with DHSC on the grounds of discrimination and their initial refusal to release the results of the public consultation, which was published shortly afterwards.
There is a clear pattern of behaviour being demonstrated which can be evidenced way back.
I can certainly lay out a draft of the basic breaches of human rights, but don't think I'm well enough to help with padding it out with detailed evidence in support of arguments.
Rest now.
Severe and very severe pwME, prevention of future deaths reports plus what's going on at Goldsmiths v non discrimination in research standards rights.
There is a clear pattern of behaviour being demonstrated which can be evidenced way back.
I can certainly lay out a draft of the basic breaches of human rights, but don't think I'm well enough to help with padding it out with detailed evidence in support of arguments.
Rest now.
Copied from a discussion thread
Link to the Executive Summary of the Goldsmith Report
recovery-channel.org
The copy and paste function brought across some formatting but I'm too unwell to rectify it now. I'll try and come back to it tomorrow.
Link to the Executive Summary of the Goldsmith Report
ME/CFS and Long COVID Recovery: The Goldsmiths Report - The Recovery Channel
ME/CFS and Long COVID Recovery: The Goldsmiths Report For many people diagnosed with ME/CFS, being told by a doctor you’ll never recover is one of the hardest parts of the journey. But a new study from Goldsmiths, University of London is challenging this narrative. The Recovery Report, a...
recovery-channel.org
The copy and paste function brought across some formatting but I'm too unwell to rectify it now. I'll try and come back to it tomorrow.
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I'm adding this in only in case anyone hasn't read the actually content of this report, because said foreward could mislead people into thinking it is primary research done with 'patients' who have 'recovered'. I've added in the page number where the facts are included, noting some are eg 30pages onwards into said report.Link to the Executive Summary of the Goldsmith Report
ME/CFS and Long COVID Recovery: The Goldsmiths Report - The Recovery Channel
ME/CFS and Long COVID Recovery: The Goldsmiths Report For many people diagnosed with ME/CFS, being told by a doctor you’ll never recover is one of the hardest parts of the journey. But a new study from Goldsmiths, University of London is challenging this narrative. The Recovery Report, a...
The copy and paste function brought across some formatting but I'm too unwell to rectify it now. I'll try and come back to it tomorrow.
The foreward seems to be not forthcoming in this conflict of interest and whether the individuals or interviews are 'representative' either of patients who were diagnosed etc and have recovered in any sense those outside the field would use that term, rather than the storytelling 'recovery stories' given in videos for a website by those working in the field. The report itself is 188pages long and so few might ever look to find the follow correct details on external validity of the population and 'methods' vs the title of the report or claims as to what might be legitimately called for on the back of it
Actually
1. the 75 interviews were mostly of those who work in the recovery arena (page 30 in the 'report in numbers' section):
2. Page 18 confirms that the suggestion these are 'recovered' people from ME/CFS isn't something that is verified in terms that any medical institution would expect:
In fact I think it should be underlined that first line should be read as "The use of the term ‘recovery’ reflects its use by the Raelen Agle/brain retraining community." in case they are misunderstanding it to be the same as what 'the community of people who become ill with ME/CFS or LC would think recovery is, particularly when comparing to medical care for other serious illness'
So there is no confirmation that these people have ME/CFS or Long COvid as per the medical diagnosis definition. Or improvement or recovery as defined by medical measures or definitions.
3. the study was of interviews that I think were already on the website - were they ones that were done with Raelen Agle?
Anyway, it was Raelen who selected which of the pre-existing interviews should be included and therefore 'analysed'. So post-hoc, and cerry-picked, rather than interviews done by the researcher
Page 19
Chandelier
Senior Member (Voting Rights)
Felis Catus
Senior Member (Voting Rights)
From @Chandelier's post:
They were dying from POTS?
No wonder that readjusting expectations helped.
(my bold)
They were dying from POTS?
No wonder that readjusting expectations helped.
Chandelier
Senior Member (Voting Rights)
Reminds me of Paul Garner's dramatic description of his couple of months with post-viral fatigue.
I've seen several discussions of toxic patient communities lately, and I'm so baffled by it. No one is forcing anyone to 1) participate in one and 2) remain in one they don't like. It's held up as this major reason why people remain ill, even though it makes zero sense. The vast majority of patients aren't even passive lurkers in such communities, and of course chronic illness existed long before social media, so it's a tiny part of the whole. But also no one is forced to be involved, literally all they have to do if they don't like a community is leave immediately and never think about it.
I have personally never seen this, but I have never been in a closed/gated community so that may be part of that. I see a lot of despair but given how much misery these people are in, it's remarkably positive and helpful. Also there are loads of studies showing that most patients find them useful, and almost every trial of a group psychobehavioral treatment cites the group as the only part they actually liked. It's one of the dominant themes in Long Covid, how the prior communities of chronically ill have been more helpful than the entire health care industry, and it's completely ignored in favor of The Narrative.
I also randomly noticed famed hater Zachary Grin, who is particularly hostile to chronically ill people, mention that he had POTS 10 years ago and recovered (didn't say how, usually it's time, so did I, mostly), and was left with intense disgust of patient communities for some reason. A lot of people are making voluntary personal experience that is more the exception than the norm influence their whole outlook on chronic illness and everyone affected by it. It's a cruel irony that those who recovered are basically some of our worst enemies, generalizing their chance experience as something anyone can achieve just because they decided that it was their own doing.
And it would be so much less awful if all of this wasn't basically reasoned using all the logical fallacies in a trench coat. I've never before seen the narrative of "some people want to recover / prefer to stay ill" from medical professionals being more prominent than this year. Things really are worse than ever, even as we slowly inch closer to a solution. This might be the only major problem affecting this many people to get solved despite nearly the entire academic discipline responsible for it acting aggressively against it.
I have personally never seen this, but I have never been in a closed/gated community so that may be part of that. I see a lot of despair but given how much misery these people are in, it's remarkably positive and helpful. Also there are loads of studies showing that most patients find them useful, and almost every trial of a group psychobehavioral treatment cites the group as the only part they actually liked. It's one of the dominant themes in Long Covid, how the prior communities of chronically ill have been more helpful than the entire health care industry, and it's completely ignored in favor of The Narrative.
I also randomly noticed famed hater Zachary Grin, who is particularly hostile to chronically ill people, mention that he had POTS 10 years ago and recovered (didn't say how, usually it's time, so did I, mostly), and was left with intense disgust of patient communities for some reason. A lot of people are making voluntary personal experience that is more the exception than the norm influence their whole outlook on chronic illness and everyone affected by it. It's a cruel irony that those who recovered are basically some of our worst enemies, generalizing their chance experience as something anyone can achieve just because they decided that it was their own doing.
And it would be so much less awful if all of this wasn't basically reasoned using all the logical fallacies in a trench coat. I've never before seen the narrative of "some people want to recover / prefer to stay ill" from medical professionals being more prominent than this year. Things really are worse than ever, even as we slowly inch closer to a solution. This might be the only major problem affecting this many people to get solved despite nearly the entire academic discipline responsible for it acting aggressively against it.
MrMagoo
Senior Member (Voting Rights)
See what they describe is what I’d call “learning to live well with your diagnosis”. I wouldn’t call it recovering or recovery.
It’s good though, I’m proud I managed to work all that out myself years ago without any brain training.
These people obviously needed outside help for that.
Chandelier
Senior Member (Voting Rights)
MrMagoo
Senior Member (Voting Rights)
Nice.
The usual then, pathologising a reasonable action in the circumstances.
Nobody can help you, no medical treatment.
Joins patient organised self-help group
Aha! You just want to be ill. Gotcha!
Are we different from the cancer patient support groups in this biologising our illness and re-informing each others problems?
Yup. Denying the reality of the context opens up all sorts of abuse because the context explains everything and so by denying it anything can be offered as an alternative explanation, it doesn't even need to make sense. Which is exactly the definition of gaslighting and why it's so harmful, 100x so when it's combined with legal authority. It's bad enough when it's from a loved one, but the authority granted in this context makes the consequences extreme.
And course it's all so much more absurd that group therapy is often preferred because it saves on costs, and it's the only part that patients seem to enjoy. This is both gaslighting and the movie Brazil (and/or Kafka) combined.
Unlike, say, having CBT/GET being forced on you for decades, by both direct and/or indirect threat from the establishment medical 'authorities', and your absolute right to refuse being ignored, and even pathologised.